关于我们

About Us

卓蔚宝贝支持中心,是中国内地首家专门针对Dravet综合征,为患者家庭提供支持服务的民办非企业单位。

We are CHN Dravet Syndrome Patient Support Group (hereinafter Dravet CHN), the first independent organization dedicated to providing support to the families affected by Dravet syndrome in Chinese mainland.

组织前身“卓蔚倡导”成立于2018年5月,由患儿家长自发成立,2020年5月正式注册成功。卓蔚工作组现有骨干成员50余名。卓蔚宝贝支持中心成立至今,得到了医生、学者、患者枢纽组织、企业、机构等多方的支持。

Our organization, previously named CHN Dravet Syndrome Advocacy, was established in May 2018 by a group of parents, and was formally registered in May 2020. Dravet CHN Team is composed of over 50 members of staff and volunteers. Since the inception of Dravet CHN, we have received support from doctors, academics, patient organization platforms, corporations, and institutions.

卓蔚宝贝支持中心的决策和监督机构是执行委员会,围绕「患者关爱」「社会倡导」「医疗协作」,采用项目制的方式开展工作。项目由负责人牵头协调,招募家长志愿者和外部志愿者参与、引进外部资源支持,共同推进项目实施和组织发展。

At Dravet CHN, the Board of Directors is responsible for decision-making and supervision. Our work is project-based and centers around patient care, social advocacy, and medical collaboration. For each project, a leader coordinates and recruits parent and external volunteers, and brings in external resources to advance the project execution and organizational development.

卓蔚愿景

Our Vision

治愈 Dravet 综合征。

Find a cure for Dravet syndrome.

 

卓蔚使命

Our mission

关爱Dravet综合征患者家庭,推动研究进展,呼吁社会支持。

To bring hope to families living with Dravet Syndrome; promote medical research; and increase social advocacy.

 

大 事 记 Milestones

2022年7月 – 组织翻译了《关于Dravet 综合征诊断和管理的国际共识》,总计2.2万字,为中国病患家庭、医生群体带来权威的国际专家共识,为临床诊疗、照护提供更好有效指导。

July 2022 – Organized the translation of International consensus on diagnosis and management of Dravet syndrome (Wirrell EC, et al.), altogether over 22,000 Chinese words, providing families and doctors with internationally recognized guidance for better disease diagnosis and management.

 

2022年5月 – 「卓蔚倡导专注 Dravet 」公众号共发表原创文章 193 篇,转载文章 349 篇,用户数近 3000 人。

May 2022 – Our official WeChat account subscribers reached around 3000, altogether we have published 193 original articles, and 349 others.

 

2022年5月 – 组织翻译了美国Dravet综合征基金会的《新确诊家庭指南》,总计1.6万字,为更多确诊家庭提供照料、治疗的全面知识。

May 2022 – Organized the translation of Dravet Syndrome: A Guide for Newly Diagnosed Families issued by Dravet Syndrome Foundation, altogether over 16,000 Chinese words, giving extensive knowledge on care and treatment to the patient families.

 

2022年4月 – 参与推动氯巴占临时进口方案进展。

April 2022 – Participated in promoting the temporary import of clobazam products to China, which was organized by government authorities.

 

2022年3月 – 彩虹桥项目正式启动,帮助患者建立就医绿色通道。

Mar 2022 – Rainbow Bridge project launched to establish a quicker and more direct access to healthcare providers for patients.

 

2022年2月 – 自然病史研究项目正式启动,助力疾病调研。

February 2022 – The natural history study project launched to help with disease research.

 

2022年2月28日 – 首支疾病视频上线,命名疾病的 Charlotte Dravet 教授正式向卓蔚宝贝支持中心授权疾病中文名称「卓蔚综合征」。

February 28, 2022 – Launched the first Dravet syndrome themed video for increasing awareness, and invited Dr. Charlotte Dravet to give the syndrome an official Chinese name.

2022年 – “卓蔚” 励精更始,蓄力前行。

2022 – Start of a whole new year, we are more determined on our efforts going forward.

 

2021年11月 – 组建 “卓蔚” 特聘专家团队,各领域权威专家共 15 人。

November 2021 – The Advisory Board was formed with 15 experts in various fields.

 

2021年11月14日 – 卓蔚倡导」公众号正式更名为「卓蔚倡导专注 Dravet 」

November 14, 2021 – Our official WeChat account name changed slightly, giving a more expressive note of our commitment on Dravet syndrome.

 

2021年10月 – “卓蔚” 文创产品项目组成立,设计生产拥有 “卓蔚” logo 的纪念品。

October 2021 – A special team was formed to create Dravet CHN related cultural products, souvenirs, etc.

 

2021年10月10日 – 启用新 logo,卓蔚宝贝支持中心进入加速发展期。

October 10, 2021 – Unveiled the new logo for our organization, and embarked on a process of rapid development.

 

2021年9月28日 – 官方微信群起航。

September 28th, 2021 – Created our official WeChat group.

 

2021年9月7日 – “卓蔚” 家庭喘息驿站(北京试点)在京启动,项目获得北京融爱融乐心智障碍者家庭支持中心支持。

September 7, 2021 – Respite Care was initiated for families in Beijing, with the support of Rong Ai Rong Le (Co-inclusion), a support center for persons/families afflicted by mental disabilities.

 

2021年8月 – “卓蔚” 发起的卓蔚宝贝护航计划获得蔻德罕见病中心支持,致力于解决患者入学难就医难的社会问题。

August 2021 – Our program to address the difficulties met by patients in school admission and healthcare access got support from CORD, Chinese Organization for Rare Disorders.

 

2021年7月15日 – “卓蔚” 核心工作组组建,全面推进各项工作。

July 15, 2021 – The core working group of Dravet CHN was formed to fully advance our work in all areas.

 

2021年1月 – 组织 Dravet 综合征病友家属积极在《人民政协报》专题活动建言并得到了政协报记者关注,以《饱受 “颤抖之痛” 的孩子 为爱 “永不放弃” 的家长 ——Dravet 综合征患者的故事与期盼》为题深入报道罕见病 Dravet 综合征及患者群体,得到了 10000 + 的阅读及转发。

January 2021 – Our patient families, in hoping to increase awareness of Dravet syndrome, actively voiced out to the The People’s Political Consultation News, and the journalist wrote an intensive report on the disease and our community. The report was widely received by the public, with over 10,000 reads.。。

2021年 – “卓蔚倡导” 笃行不怠,开启了新征程。

2021 – Stay committed on Dravet syndrome, and set sail on a new 2021 Journey.

 

2020年底 – “卓蔚” 联合乐普医疗推动癫痫发作监测手环开发,量身定做适合 Dravet 综合征患儿的智能穿戴设备,并招募体验官参与测试。

At the end of 2020, Joined hands with Lepu Medical in developing a wearable band, which can monitor seizures. We also helped hire patients for product try-out.

 

2020年10月末 – “卓蔚” 与幸美股份成功牵手,开启了《皮卡丘爱心包公益项目》,给学习急救知识的患者家庭免费发放秒秒测体温计。

End of October 2020 – Partnered with H&B Corporation for the Pikachu charitable project, giving out patient families booklet of emergency treatment and free body temperature monitor.

 

2020年10月初 – “卓蔚”《行稳致远计划:帮助 Dravet 综合征患者改善蹲伏步态》项目获罕见病公益创新大赛最高奖 —— 创新奖。

Early October 2020 – Won the top prize, Award of Innovation, in the Rare Disease Innovation Competition – for the project “Steady as we go: helping people with Dravet syndrome improve their crouch gait”.

 

2020年7月31日 – “卓蔚” 携手豌豆 Sir 制作科普漫画,让更多的人看到和了解了 Dravet 综合征。

July 31, 2020 – worked with Wonder Sir and created a comic article to promote public awareness of Dravet syndrome.

 

2020年6月28日 – 卓蔚宝贝支持中心宣告正式注册成立,以此为契机,卓蔚执委会也同时成立。

June 28, 2020 – Dravet CHN was officially registered in the Civil Affairs Bureau, meanwhile, the Executive Committee was also established.

 

2020年6月1日 – 深圳饭团开饭,宝贝儿们开开心心过儿童节。

June 1, 2020 – Off-line gathering for patients and their families in Shenzhen, celebrating a happy Children’s Day.

 

2020年6月 – 提出 Dravet 综合征临床急需药品情况说明,呼吁尽快满足 Dravet 综合征患者急需的用药,推动相关药品引进。

June 2020 – Presented a situation report on drugs in dire need clinically for patients with Dravet syndrome, and call for their introduction to the Chinese market.

 

2020年4月 – 南京饭团开饭,宝妈们推杯换盏话家常。

April 2020 – Off-line gathering for patients and their families in Nanjing.

 

2020年3月-2022年5月 – “卓蔚” 开启 “线上医患对话会系列直播”,至 2022 年 5 月,已经举办了 10 场医患对话会和 1 场病友交流直播,累计收看人次过万次。

March 2020 – May 2022 – Launched the series of webinars themed doctor-patient dialogues. By May 2022, 10 live doctor-patient dialogues, and 1 patient exchange session organized, with viewers over 10,000.

 

2020年 – “卓蔚倡导” 迎来了收获的一年。

2020 – A Year of Harvest for Dravet CHN.

 

2019年12月25日 -北京 “饭团(线下聚会)” 开饭,北京患友及家属欢聚一堂。

December 25, 2019 – Off-line gathering for patients and their families in Beijing.

 

2019年11月28日 – “卓蔚” 网站正式上线。

November 28, 2019 – Launch of our website www.dravetsyndrome.org.cn

 

2019年8月25日 – 参与《2019 年中国罕见病患者综合社会调查》调研项目,提交有效问卷 400 余份。

August 25, 2019 – Participated in the research project of 2019 Comprehensive Social Survey of Patients with Rare Diseases in China, and submitted over 400 reliable questionnaires.

 

2019年5月5日 – 我们迎来了 “卓蔚” 首个项目 “霹雳贝妈的防御斗篷”。;

May 5, 2019 – We initiated our very first project, “The Protective Cape for Wonder Moms”.

 

2019年2月26日 – 改写百度百科 “Dravet 综合征” 词条。

February 26, 2019 – Rewrote the entry of Dravet Syndrome on Baidu Baike, a Chinese online encyclopedia.

 

2019年 – “卓蔚倡导” 默默耕耘,持续分享书籍《小儿癫痫》、原创内容《家庭药物剂量调整贴士》等。

2019 – Continued to share book reviews on Pediatric Epilepsy; wrote an original article of tips for adjusting medication dosage at home.

2019 – 厚积薄发

2019 – Accumulate Little Strength for Bigger Goals

 

2018年9月4日 – 公众号完成了整本英国手册《Dravet 综合征家庭指南》 推送,共 68 期。

September 4, 2018 – Organized the translation of Dravet Symdrome Family Guide issued by Dravet Symdrome UK, with altogether 68 articles posted on our Official Wechat Account.

 

2018年5月4日 – 创办公众号「卓蔚倡导」并首次发声,标志着这个以 “治愈 Dravet 综合征” 为使命的患者组织正式成立。

May 4, 2018 – First article posted on our official WeChat account (ID: DravetChina), signifying the official establishment of CHN Dravet Syndrome Advocacy, a patient organization committed to find a cure for Dravet syndrome.

2018 – 小试牛刀

2018 – Dravet CHN Rises